Health research funders sign on to goal of greater research data sharing

An international group of major health research funders have made a “joint statement of purpose” announcing, in strong and clear terms, their intent to promote greater sharing of research data.

As public and charitable funders of this research, we believe that making research data sets available to investigators beyond the original research team in a timely and responsible manner, subject to appropriate safeguards, will generate three key benefits: faster progress in improving health, better value for money, and higher quality science.

The 17 signatories (so far) include many major governmental funding agencies (e.g. US National Institutes of Health, the Wellcome Trust, The Centers for Disease Control, the UK Medical Research Council, Australia’s National Health and Medical Research Council, the Canadian Institutes of Health Research, France’s National Institute for Health and Medical Research, and the German Research Foundation), private foundations (e.g. the Bill & Melinda Gates Foundation and the Hewlett Foundation) and even international organizations such as the World Bank. The group has invited additional funders to sign on to the statement.

Some of the long-term goals articulated in the document are near and dear to our hearts, in particular:

To the extent possible, datasets underpinning research papers in peer-reviewed journals are archived and made available to other researchers in a clear and transparent manner.

and

The human and technical resources and infrastructures needed to support data management, archiving and access are developed and supported for long-term sustainability.

An accompanying comment in The Lancet by Mark Walport of the Wellcome Trust and Paul Brest of the Hewlett Foundation (Sharing research data to improve public health,DOI:10.1016/S0140-6736(10)62234-9) raises some of the hard, but by now familiar, questions that will drive the approaches taken by the funding organizations: how to balance the rights and responsibilities of data generators and data users; how to safeguard and further the interests of the data subjects themselves; and how to ensure that the benefits of data sharing justify the expense and burden involved.

It will be very interesting to watch how the funding organizations work singly and in concert to overcome decades of cultural familiarity with data hoarding in the health sciences and, as Walport and Brent put it, “mend their ways.”